Wednesday, April 6, 2011

Catch Them Early!

Most people are fascinated by multiple births. Twins, triplets, quads - so exciting! But to obstetricians, pediatricians and other child development specialists, multiple births spell trouble. A woman expecting twins is by definition a high-risk mom; the more babies, the higher the risk - both for the mother and for the babies.

So when Shefali arrived at our Early Intervention Centre in Dehradun, India, with her four babies, we were amazed that only one of them had difficulties. Lakshi was the smallest of the four and the last one born. The ultrasound had detected three children, so her arrival was a surprise no one was prepared for. A month premature, she weighed well under a kilo at birth and she didn’t cry immediately.

Any one of those facts - multiple birth, premature, low birth weight, delayed birth cry - should have prompted the obstetrician or the pediatrician to advise the mom to visit an Early Intervention Centre, but in India, such advice is rare. Lakshi was over seven months old before her mother started worrying about her development and nearly a year before she learned of our existence.

Our pediatrician diagnosed Cerebral Palsy with associated developmental delay and Lakshi was enrolled in our intensive mother-and-child program whose goal is each child’s  holistic development. An inter-disciplinary approach ensures that children learn social skills while doing physiotherapy and language development while working on fine-motor skills. Every activity we do with the children has a purpose, though all the children know is that they are having fun.

Shefali was a poster-mother. Her energy and commitment to Lakshi’s growth was an example and an inspiration to both the other parents and to the staff. Nobody in the EIC had anything like the demands on their time that four babies of the same age presented, yet Shefali never seemed tired or cross or impatient. Other mothers sought her out for advice and direction - another carefully nurtured feature of the EIC’s approach. Mothers Support Groups are an invaluable resource, especially for new moms just setting out on the adventure of raising a child with special needs.

And Lakshi’s improvement - slow, but steady - was also inspiring. Other mothers looked at her and found hope for their own children. By the time she graduated from the EIC at age 6, Lakshi was walking with the help of a rollator, speaking in short sentences and more than eager to join a mainstream school like her brother and two sisters.

Finding that mainstream school has been the challenge. The one her siblings attend pleaded an inaccessible environment for a child with physical difficulties. The one she finally enrolled in refused to allow her to participate in any activities outside of her classroom because that would involve someone helping her to move. When her parents learned that she was being left alone in the class, with no light and no fan, they withdrew her.

Attending Latika Vihar - our inclusive neighborhood children’s centre - gives Lakshi the chance to be with other children who accept her for who she is. The fun of being with other kids, enjoying normal activities like art and craft, music, pottery and games has bolstered her self-confidence and restored her self-esteem. That’s important, because her mainstream education experience is still an uphill struggle.

Now she’s has joined a high-end government school meant for children of government officers (her father is one). Legally, the school cannot refuse her admission, a fact which the headmistress refers to over and over, making it clear that if she had her way, they would never have taken her.

Early Intervention is only the beginning of a long, exciting journey to change a society which is afraid of differences. We are hard at work trying to win over the teachers and the management of that government school, trying to create a place for Lakshi which is hers by right, trying to build an inclusive world, step by step, by little and by little.

Photo Credit: Muir Adams


chicu said...

oh Jo. That is a heartbreaking story. For all the little Lakshis being penalized for no fault of theirs. The first school should be sued for leaving a little child all alone! But it won't be. And that is understandable. The task is just too heavy,too fatiguing. More important, revenge takes a back seat to bringing up a little child-as it should.
but now the school has learnt that if you ill-treat a child, uncomfortable problems go away.

Jo Chopra McGowan said...

You are so right. Schools love it when parents just walk away to lick their wounds - then they don't have to deal with them.

Parents are constantly faced with this dilemma: stay and fight, making their child's problem into an opportunity for other children; or do what is best for their own individual child. It's too horrible and no one should be put in this position. But it's true in so many situations.

Anonymous said...

And step by step and little by little we will win...
The Government school could not legally refuse her..we need to get the upper end Private schools to accept their role and responsibility ...I have recently heard of one of the best schools in the country refusing someone admission after a gruelling test only because she took insulin injections....!!!!...and they as 'a fine boarding school' did not want to take the 'risk'...


Jo Chopra McGowan said...

The Doon School refused admission to a child with low vision a few years ago (one of their more memorable arguments was: "What if there were an earthquake? We are in Zone 5, Madame. What if he were left behind when all the other children evacuated?"); then, after repeated efforts from his parents (and me!), he was admitted. His Class Ten Board marks? 95%

Anonymous said...

Lucky have parents and you to champion his cause...

ana @ i made it so said...

thank you for sharing these stories, raising awareness and creating this dialogue. your posts always make me think...

(also, unrelated -- lovely new look here! like you threw open the windows and let some fresh spring air in ;))

ana @ i made it so said...

now, i just had to come back here and clarify that i wasn't implying your old blog was stale or in need of airing out. just so we're clear on that! lol i just meant it looked fresh and springy. yeesh :)

Jo Chopra McGowan said...

ana, I am so glad we cleared this up. I was all set to take offense and go off in a HUFF. HAHAHA.

ana @ i made it so said...

phew! ;P

Entropy said...

On Education

When infant Reason first exerts her sway,
And new-formed thoughts their earliest charms display;
Then let the growing race employ your care
Then guard their opening minds from Folly’s snare;
Correct the rising passions of their youth,
Teach them each serious, each important truth;
Plant heavenly virtue in the tender breast,
Destroy each vice that might its growth molest;
Point out betimes the course they should pursue;
Then with redoubled pleasure shall you view
Their reason strengthen as their years increase,
Their virtue ripen and their follies cease;
Like corn sown early in the fertile soil,
The richest harvest shall repay your toil.

By Elizabeth Bentley 1767–1839

Veena said...

Just out of curiosity...are Lakshi and Kirti the same child ?
Or do you know two Mothers who have had quads ?

Jo Chopra McGowan said...

Veena, well spotted!

They are the same child. I must have forgotten I had already written about this kid; and suddenly decided I should protect her identity.

Nice to know someone reads my blog so carefully!